The Big Hearted Echos Blog provides content in the following areas: News, science reviews, HCMA news, and perspectives.

From the desk of the Hcma ceo:

Salberg

The Audacity of Grief

By Lisa
Posted in

Can we talk about grief for a moment? We all experience loss, and each loss impacts us differently. There is no rule book for processing grief, and that’s a beautiful thing – processing grief is unique to the individual it happens to. Grief is defined as a specific type of suffering that is often tied…

The Mavacamten Marathon

By Lisa
Posted in

Camzyos™ Approval This is an exciting time for the HCM Community.  The FDA has approved Mavacamten under the brand name CAMZYOS, the first-in-class medication for symptomatic obstructive hypertrophic cardiomyopathy and the first drug developed specifically for HCM. Read the press release here CAMZYOS Patient Portal CAMZYOS Medication Guide CAMZYOS U.S. Prescribing Information CAMZYOSTM REMS (Risk Evaluation and Mitigation Strategy) Our…

Ever Wonder Who’s at the Center of Patient-Centered Care?  Look Again

By Lisa
Posted in

Of all the players in the healthcare system, patient advocacy organizations are often the most disadvantaged when a drug hits the market and they find themselves pitted against health providers, payers, pharmaceutical companies, and policymakers, all of whom want their piece of the financial pie.

Lori

The day that changed my life: June 12, 1995

By Lisa
Posted in

The day that changed my life was June 12, 1995, a Monday. The phone rang at 5:50am, which is never a good thing. I managed to roll over with my 8-month pregnant belly and answer the phone on the second ring. The voice was familiar but panicked it was my mother. “She is not breathing…

Lisa, age 12

Lisa, we have your heart. How soon can you be here?

By Lisa
Posted in

So there I was holding my heart in my hands while a new heartbeat was in my chest. Talk about surreal moments! The path that led to this moment encompasses 36 of my 48 years on this earth and in this one moment, I came face to face with the very thing that I had hated, feared, and loved… my heart.

HCMA Blog Roll

blog roll
Thanksgiving dinner

The Holidays Can Be Healthy For Your Heart

By Gordon Fox

We’ve all had the experience: holidays can mean eating too much (much of which isn’t good for you), drinking too much, and getting no exercise. It doesn’t have to be like that! A new article in Cardiology Magazine (published by the American College of Cardiologists) suggests a strategy for heart-healthy holidays. There are strategies for…

HCM and Mental Health

By Gordon Fox

Learning that you have a serious chronic disease can be stressful. Now a group of researchers in Korea provide evidence (Park et al. 2022) that mental health problems can be an important consequence of diagnosis with HCM. Methods The research team was led by Hyung-Kwan Kim of Seoul National University. These scientists compared the risk…

Mavacamten Affects Diastolic Dysfunction

By Gordon Fox

Background HCM patients commonly suffer from diastolic dysfunction (also called heart failure with preserved ejection fraction (HFpEF), or left-sided heart failure): their hearts do not fill adequately. As a result, even after septal reduction therapy (SRT: myectomy or alcohol septal ablation), some patients are quite symptomatic. Can mavacamten (Camzyos) help relieve their symptoms? Now a…

Expert consensus on syncope in HCM

By Gordon Fox

Syncope (fainting) is common among HCM patients, but its causes are frequently unknown. An expert panel has published guidelines for diagnosis and treatment of syncope in HCM.

504 Plans and HCM

By admin

We understand how challenging it can be to manage life with HCM, and we want to lend a hand.As such, this is the first in a series of short articles to help to get you started concerningissues such as a 504 plan for your child’s school. Other examples are, what qualifies you forSocial Security Disability…

Septal Myectomy Today

By Gordon Fox

What’s the status of septal myectomy today? A recent review paper by an Expert Panel for the American Journal of Cardiology (Maron et al. 2022) concludes that “Surgical myectomy remains the time-honored primary treatment for hypertrophic cardiomyopathy patients with drug refractory limiting symptoms due to LV outflow obstruction.” One of the safest of heart procedures…

Can HCM Patients Use Alcohol, Chocolate, & Coffee?

By Gordon Fox

We hear many different claims about what HCM patients (or heart patients in general) should or shouldn’t eat and drink. This is a big topic, and for much of it, the science doesn’t have simple answers – at least not yet. But it turns out that there are some answers for three things that many people like (and many people won’t touch): wine, chocolate, and coffee.

NYHA Class Categories

By ross

Doctors usually classify patients’ heart failure according to the severity of their symptoms. The table below describes the most commonly used classification system, the New York Heart Association (NYHA) Functional Classification1. It places patients in one of four categories based on how much they are limited during physical activity. In the HCM community, this NYHA…

ACC: ORIGINAL INVESTIGATIONS Myosin Inhibition in Patients With Obstructive Hypertrophic Cardiomyopathy Referred for Septal Reduction Therapy

By ross

BACKGROUND Septal reduction therapy (SRT), surgical myectomy, or alcohol ablation, is recommended for obstructive hypertrophic cardiomyopathy (oHCM) patients with intractable symptoms despite maximal medical therapy but is associated with morbidity and mortality. OBJECTIVES This study sought to determine whether the oral myosin inhibitor mavacamten enables patients to improve sufficiently to no longer meet guideline criteria…

Training and Experience Count: Myectomy is Safest at High-Volume Centers

By Gordon Fox

Myectomy is safest at high-volume centers.

News - HCMA and HCM related news

1News

HCM and Mental Health

By Gordon Fox

Learning that you have a serious chronic disease can be stressful. Now a group of researchers in Korea provide evidence (Park et al. 2022) that mental health problems can be an important consequence of diagnosis with HCM. Methods The research team was led by Hyung-Kwan Kim of Seoul National University. These scientists compared the risk…

Mavacamten Affects Diastolic Dysfunction

By Gordon Fox

Background HCM patients commonly suffer from diastolic dysfunction (also called heart failure with preserved ejection fraction (HFpEF), or left-sided heart failure): their hearts do not fill adequately. As a result, even after septal reduction therapy (SRT: myectomy or alcohol septal ablation), some patients are quite symptomatic. Can mavacamten (Camzyos) help relieve their symptoms? Now a…

Expert consensus on syncope in HCM

By Gordon Fox

Syncope (fainting) is common among HCM patients, but its causes are frequently unknown. An expert panel has published guidelines for diagnosis and treatment of syncope in HCM.

Septal Myectomy Today

By Gordon Fox

What’s the status of septal myectomy today? A recent review paper by an Expert Panel for the American Journal of Cardiology (Maron et al. 2022) concludes that “Surgical myectomy remains the time-honored primary treatment for hypertrophic cardiomyopathy patients with drug refractory limiting symptoms due to LV outflow obstruction.” One of the safest of heart procedures…

Can HCM Patients Use Alcohol, Chocolate, & Coffee?

By Gordon Fox

We hear many different claims about what HCM patients (or heart patients in general) should or shouldn’t eat and drink. This is a big topic, and for much of it, the science doesn’t have simple answers – at least not yet. But it turns out that there are some answers for three things that many people like (and many people won’t touch): wine, chocolate, and coffee.

NYHA Class Categories

By ross

Doctors usually classify patients’ heart failure according to the severity of their symptoms. The table below describes the most commonly used classification system, the New York Heart Association (NYHA) Functional Classification1. It places patients in one of four categories based on how much they are limited during physical activity. In the HCM community, this NYHA…

ACC: ORIGINAL INVESTIGATIONS Myosin Inhibition in Patients With Obstructive Hypertrophic Cardiomyopathy Referred for Septal Reduction Therapy

By ross

BACKGROUND Septal reduction therapy (SRT), surgical myectomy, or alcohol ablation, is recommended for obstructive hypertrophic cardiomyopathy (oHCM) patients with intractable symptoms despite maximal medical therapy but is associated with morbidity and mortality. OBJECTIVES This study sought to determine whether the oral myosin inhibitor mavacamten enables patients to improve sufficiently to no longer meet guideline criteria…

Training and Experience Count: Myectomy is Safest at High-Volume Centers

By Gordon Fox

Myectomy is safest at high-volume centers.

Cardiac implantable device infections

By admin

The HCMA participated in an American Heart Association summit of more than 40 health care professionals to bridge gaps in awareness, detection, and appropriate treatment of cardiac implantable electronic device (CIED) infections.

CYTOKINETICS AFICAMTEN RESEARCH

By admin

REDWOOD-HCM OLE REDWOOD-HCM OLE: First Long-Term Data from Open Label Extension Cytokinetics’ also announced positive data relating to aficamten from REDWOOD-HCM OLE (Randomized Evaluation of Dosing With CK-274 in Obstructive Outflow Disease in HCM Open Label Extension) and the results from two additional analyses of omecamtiv mecarbil from GALACTIC-HF (Global Approach to Lowering Adverse Cardiac Outcomes Through Improving Contractility in Heart Failure), all presented in Late-Breaking Science Sessions at Heart Failure 2022, an International Congress of the European Society of Cardiology.…